Baby born with brain seeping through skull has life-changing reconstructive surgery

Little Dominic Gundrum was born against incredible odds. During pre-natal development, his skull hadn’t fused together properly – leaving a large triangular gap from his upper lip, through the middle of his nose and forehead.

The condition – known as a Tessier midline facial cleft – caused an even more disturbing health problem. Tissue and fluid from Dominic’s brain had seeped through the cleft in his face. As a result, a bubble the size of a golf ball formed underneath the skin on his forehead – a condition known as encephalocele.

With such a rare combination of both a Tessier cleft and encephalocele, doctors initially thought Dominic’s chances of survival were bleak. But despite overwhelming adversity, Dominic was born without complication – and surgeons from Boston Children’s Hospital have helped reconstruct his face, giving him a new chance at life.

Dominic’s parents, Mary and Mark Gundrum, found out about their son’s condition when they went to the doctor for Mary’s routine 20-week ultrasound. At the time, the only thought on their minds was finding out the gender of their child.

However, the ultrasound showed them much more than they expected.

“At first, we were told he would probably die within a few hours and that we should do our best to enjoy the pregnancy,” Mark Gundrum recalled. “Over time, his prognosis got better, and the doctors agreed he’d survive birth. But after that, they had no idea what may happen to him. It was a real no-man’s land territory for all of us.”

Internet sleuthing led the Gundrums to Dr. John Meara and Dr. Ed Smith, surgeons at Boston Children’s Hospital who had treated a rare, severe encephalocele case before. The soon-to-be parents breathed a huge sigh of relief when Meara called them to say he had seen this case before and that everything would be fine.

Dominic was eventually born in good health, giving his parents hope that he would live to have the surgery he needed. However, his mother noted she was somewhat apprehensive before the surgery.

“We’ve fallen so in love with Dominic over the past few months that the idea of changing him in such a dramatic way is a little bit difficult,” Mary Gundrum said right before the surgery. “In the long run, it’s what’s best for him, but so much will change in one day. It’s exciting, but there is a small bit of sorrow knowing that tomorrow this baby I’ve grown to love so much will look so different.”

The procedure ultimately involved 15 doctors, specialists and hospital staff and lasted for several hours. Meara and his team were able to remove part of the baby’s skull and the encephalocele. After much repositioning parts of Dominic’s brain and reconstructing his skull, Dominic was recovering in the ICU after more than eight hours of surgery.

While Dominic continues to be monitored at the hospital – and may ultimately experience more health problems as he grows older – the Gundrums are looking forward to their son living the life they always wanted for him.

“The day Dominic was born, a group of friends had a tree planted in our yard in his honor,” Mark Gundrum said. “I remember thinking, 10 years from now, I’m either going to look at that tree and think of the son I lost, or watch him climb its branches. Right now, thanks to so many wonderful people at Boston Children’s and beyond, I’m excited to watch him hanging from that tree as they both grow bigger and stronger.”